Coil and Endometriosis: Hi all! I had my... - Endometriosis UK

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Coil and Endometriosis

EmsP profile image
EmsP
16 Replies

Hi all! I had my first laparoscopy back in May 2022 and I had a mirena coil put in as this was meant to help with the endo. A little background, it took me 9 years to be diagnosed and was put on every pill under the sun because my body would basically override it within 6-18 months. Having said that, I'm now 8 months on from having my coil put in and I'm worried that history is repeating itself. I seem to be getting long periods with hardly any break, and my usual endo symptoms that had calmed down such as bloating, back pain etc to almost the same level pre surgery. Does anyone know if this is common for the coil, or anyone have any wisdom they could shed? Thanks a lot lovely people :)

16 Replies
JulesUK profile image
JulesUK

I’m sorry you’ve had your symptoms return. My experience with the coil has been nothing but positive but I know it doesn’t agree with everyone. Could you ask a nurse at the GP surgery to check it’s all still in place for you? I presume they did this after your laparoscopy anyway as standard practice? x

Endo_27 profile image
Endo_27

Hello,

I had the Jaydess coil for 3 years and it was positive for me and I stopped bleeding completely and it suppressed the pain. also the injection worked well too. The contraceptive that wasn’t good was the implant and I bled every day for 10 months.

However with the coil I think it did take around 6-8 months for the hormones to settle as I remember at the beginning having a surge of acne and some spotting etc. Maybe give it a few more months and if you’re still getting those symptoms then look into another contraceptive x

Username12345678 profile image
Username12345678

Hello. I had a similar experience. Was very reluctant to try the mirena but eventually gave it a go as I couldn’t stay on Prostap indefinitely. It made my periods really long (2-2.5 weeks a month) and although my ‘endo’ symptoms reduced, they were replaced with terrible back ache and sickness. I had it removed after a year.

I also couldn’t take the pill as it really badly affected my mental health.

They did discover later that I also have Adenomyosis. Not sure if that was a factor?

EmsP profile image
EmsP in reply to Username12345678

Thanks for your reply! Just a quick question, how do they diagnose Adenomyosis, is this also laparoscopy?

Username12345678 profile image
Username12345678 in reply to EmsP

that was by mri. I had a total hysterectomy a year ago and it was confirmed again then

Alsa12 profile image
Alsa12

Hey, if it is causing trouble I’d try and enquire about getting it removed sooner rather than later as there can be a long wait for removal.

I had coil put in during my laparoscopy and had a few great years with it. It’s since changed position (upside down in the wrong place) and having it removed has turned into a massive ordeal. I first tried to get it removed back in september (5 months ago). I’ve had a nurse at the GPS try to remove it then a GP and then a gynaecologist with specialist equipment and no luck. I’ve had to have ultrasounds and CT scans to locate it and been added to a waiting list for a hysteroscopy to remove it. Average wait on this is 18-20months in my area. I also want it removed to start trying for a family and so it’s an urgent ref and even urgent is now 12-18months wait.

Long way of saying, if in doubt don’t wait to speak to your doctor or consultant as something seemingly easy for some people can become a complex procedure.

The coil has been fab for me and massively relieved my symptoms and I’d still advocate for people to try the coil but with the sad state of waiting times it’s important to know the overall picture.

Ronsk profile image
Ronsk

Hi , I have had the coil since December with a view to it helping my pain. However, the last few months pain has increased and I'm sore all the time.ive just had results from my mri scan showing signs of progression of endo since last year. I am now awaiting feedback from the mdt team re 3rd laparoscopy to remove endo,my biggest worry is they say I need a hysterectomy as I don't feel ready for it but then I need to think about my quality of life.i am on massive amounts of pain meds and have no idea how I function with them but it does affect my memory as well as other cognitive problems..I need to come off them and the sooner the better.

KlP28 profile image
KlP28

hi. I had a laparoscopy in November 2020 & had the mirena coil fitted. It did take 9 months for the bleeding / spotting to completely stop. So I have been period free since then, however, it has not helped on the pain front at all.

If your periods don’t seem to be settling down at all by now, I’d seek medical advice.

Good luck x

MoominBabe92 profile image
MoominBabe92 in reply to KlP28

Hi! I have had a similar experience, curious to know if you still have the IUD?

KlP28 profile image
KlP28 in reply to MoominBabe92

I do at the moment. Thinking of having it removed, but feeing quite anxious about doing so :/

MoominBabe92 profile image
MoominBabe92 in reply to KlP28

Same! I'm here if you ever want to discuss, I have only just found out, a year after my internal ultrasound, that it may be in a bad position which could be the reason for my increased levels of pelvic pain, however it did stop my bleeding and back pain... but I've also put 2 stone on so I know the back pain will be even worse if and when it's removed x

Mcyizml2 profile image
Mcyizml2

I’ve just had a coil fitted - apparently it can cause bleeding for several months before it settles down. They can manage that with progesterone or tranxemic acid (might have spelt that wrong)! I’m getting a repeat mri in a year to check it hasn’t spread despite the coil…

Hi, I had a similar experience with mirena coil. My periods got lighter, but pain was still intense. They then tried me on prostap injections. Still painful and got side effects also.

Now nearly 2 years on from hysterectomy and fingers crossed ok.

EmsP profile image
EmsP

Thank you so all for your replies, it means a lot! I had a smear a couple of months after my laparoscopy and they couldn't find my coil so they sent me for a scan and in December it was confirmed that my coil is still where it's meant to be. I think the frustrating thing is everything has been fine with my coil, until November (6 months). Periods started to get longer, symptoms started to come back and now I'm back to not being able to do anything! It's just frustrating :( fortunately I get private medical through work, so waiting for that to be sorted and I'll make an appointment!

tinkbabe8 profile image
tinkbabe8

Hi, I also had my first lap may 22 and a mirena coil replaced. My first one took a while to settle but after a year it worked OK. The one I had put in after surgery has now been removed( Dec 22) as I was getting horrific back pain and numbness. I had jt removed to sort of rule it out type of thing. My back pain has pretty much gone now so it just shows. That was the only thing to change too. It works well for some but maybe not working for you. I was told the coil wouldn't be the cause, but because I was adamant she remove it she did and I'm glad in one way. The period pain though, I almost wanted it put back in! Hope you get sorted with it : )

Liche profile image
Liche

I had a coil put in during laparoscopy and it was life saving for me. Last year I had to change it and it was ver unsettling for my body. After 5 months am getting there. I guess it takes time for the body to get use to? Agree with some of the comment that it's better to talk to GP ASAP and get a gynecologist appointment. Perhaps coils has moved? All the best.

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